Longing....

Sometimes there are things that touch me. Turn me upside down and inside out. Often they highlight a feeling of longing deep within me. A feeling that I rarely hang out in. I am a pragmatist. I feel whatever feelings come along but if they do not move me where I desire to be I pay little attention to them and move on.

Longing - deep yearning or desire for something. I have had inexplicable moments of longing for all of my life. Sometimes, in the past, I could pin it on something like wanting a lover/boyfriend, or being somewhere else, or even pictures of the Universe. Real images or not, they bring about a sense of longing, like I remember a time when I lived amongst them, so much more than I do now.

I think we all experience longing. A huge part of grief is longing. Longing that things could have been different. As a parent of a child who died the longing can be intense. It is your job to keep your child safe. The belief that if you or someone else would have done something different, your child would still be here, alive.... It can be very heavy. In my grief experience that is something I chose to explore very rarely. And that is not a judgment towards anyone, including myself. Everyone's experience of grief is different. For me I found it impractical. I focused on the raw pain, deep sadness and even rage from the experience. But, what was done was done. If anything like that happened again I would make some different choices but I could not change the past. Nor could I change the fact that my son was dead.

And then a song like this comes along. It's been out since 2011 but I am hearing it and feeling it now and I cannot stop listening.

The longing it elicits is not connected to any one thing; a relationship, being somewhere else, what could be, what used to be, the Universe, the life of my Eli... but rather all of it.

I can say that the feelings of inexplicable longing are more poignant, powerful, timeless and common since the death of my son. So I am listening to this song over and over again and crying. Tears are streaming down my face as I write this and listen to the song. And I feel that in this seemingly strangeness or even silliness that there is healing that is occurring with each replay. It's like another part of me is being opened up and released through my tears every time the song starts again.

My son and his death truly has been and continues to be the crack in my being that lets the light in.

Education Soap Box

Soap box.

This is where our American exceptionalism causes blind spots in the vision of our country. Finland is just one of many countries that are doing education better than us. And they did this turn around powerfully and quickly. We are fools if we don't look at what other countries are doing successfully and see what we can learn and implement in our country. There are examples of some schools in the US that are doing things like this and showing positive changes.

We are failing our children and our country with our currently accepted educational model. Educated children make educated adults who then make educated decisions as law makers and leaders. We need this. Our reliance on military might and our immense economy to define us as a world leader is floundering. Our ability to force others to see and treat us as "special" is crumbling.

I wonder why we now see this phenomenon of our children hating school. Some like to call them entitled and spoiled and in some instances I am sure that is true. It's human nature for some people to be that way. The bigger problem I see is that the educational system does not treat them as dynamic, evolving humans. There are amazing teachers who do and they are the people who are saving the children from a system that is set up to dehumanize them, even if that is not the plan, that is what happening. These children know it could be better and they are fighting for that by controlling the only thing they can control, themselves and their minds. They check out and refuse to participate.

One of the things I have learned from my son is to follow his lead. He knows what works for him. How do I know this? Because he succeeds when I let him show me what he needs. This does not mean that he gets to do whatever he wants. I say no to him more than any other person on this planet. What it means is that I trust his inherent intelligence. All children have this inherent intelligence, that's what playing helps to grow. We need to use their intelligence for them/with them to have successful educated children.

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April is Autism Awareness Month

On May 27, 2013, at 2 years and 9 months old, Nolan received a diagnosis of severe autism. He hit 11 out of 12 diagnostic points of autism in his 3 evaluations with the developmental pediatrician over the previous 6 months. He was completely non verbal at the time with limited social interaction outside of those he saw on a daily basis, zero safety awareness, limited environmental awareness, extremely high pain tolerance, global developmental delays, severe sensory challenges, challenged executive functioning and while strong his gross motor functions were highly disorganized. His sensory meltdowns were very scary to him.

He was also affectionate, loved to laugh, be tickled, and kissed. He loved to play in the water and with bubbles. Playing in the sand was ecstatic for him. He had no idea how to and no interest in playing with toys but he LOVED colors, shapes, letters and words. And Baby Einstein??? We lived those DVD's for years...

Nolan has had anywhere from 10-20 hours a therapy a week for over 2 years along with attending developmental preschool for 10 hours a week during the school year for almost 3 years.

Since that day in 2013 I have seen his development explode. He started making his daily rainbows. He talks now and is able to say what he wants, what he likes, what he needs. He tells me he loves me. He calls me mommy, or mama. He says hello and goodbye to people by name. He has mastered his ipad and all the games on it. His love of music is his own and his ipod and blue tooth speaker are his constant companions. He loves airplanes, school buses and cars and is now playing with them. He rocks at puzzles and is reading, writing and learning how to ride a bike.

This is the reality of an autism diagnosis in our family. Some days he might look like any other big 5 year old boy, he's almost 4 ft tall. Other days he might look like a spoiled brat. Other days he might very obviously look like he has autism, however you think that looks.

But every single day he is my Rainbow Maker.
His future is limitless.
His potential, endless.

April is Autism Awareness month.
Be ready to be made aware.

Love and Rainbows,
Nolan, The Rainbow Maker, and his mom.

If you would like to follow my son's experiences in life and autism please join us on his Facebook page. Click here.

Another Birthday

Yes, another birthday, this one is mine though, not the boys. March 14th, 19.....

My birthdays are quiet affairs these days, getting together with family, and LOTS of birthday wishes on social media! I mean, it really was wonderful. I especially love the ones with the images and those with the extra sentiments. I am just a sucker for those things, always have been. I used to be on TOP of getting birthday cards out through snail mail, back in the day... But then I was not a single mom, nor mom at all, nor was I busy with all the big important mom stuff I do.

There were a lot of things I used to do, back in the day that I don't do anymore. Some of them were easy to give up, professional pedicures. They weren't that important. Some of them were hard to give up, fancy coffee drinks. Not something I needed but something that I wanted. And then there are those things that I never in a million years wanted to give up or ever even considered I would give up and yet, here I am... Birthdays do that - help you think of these things....

I started a couple of daily mindful practices the beginning of this year including; reading something inspirational or that I learn from, writing down something I am grateful for and outlining what my daily goals are, based on my son's and my schedule for the day... In this practice some things have happened....

I have completely read two books! One of the things I had given up, though not intentionally,  just due to time limitations, was reading for fun. The books I like to read for fun are usually those that teach me something, so my daily reading mindfulness practice has fit right in. I read two books at 5 minutes a day since January 1st. I have always said that everyone can find 5 minutes in a day to do something they enjoy and it seems like that thought may have been right....

Getting a good night's sleep is also something I gave up. I truly had no idea that I could go on such limited sleep for years and still function.... Though I have to say that the functioning had gone down hill lately as it became just too much. Thankfully we seemed to have turned a corner, at least for now. My son is able to sleep through the night more times than not in a week. I have also began to put a priority on my own bed time and am planning on creating a bed time routine for myself! Oh how wonderfully old of me!

Anyway, I mentioned getting a good night's sleep. Well, "waking up" after only sleeping 2-3 hours for the 10th, 20th plus, night in a row makes it very, very, VERY hard to come up with something to be grateful for, unless it is a nap or coffee in my near future.... While I have always thought of myself as a positive person, it seems as though my positivity had become much easier to experience for my clients, students, friends/family. For myself I focused on what needed to be done next. It's my pragmatic side coming out. My To Do List has subcategories with other To Do Lists attached. I am serious, truly... Working to recreate your own business, help run a non profit, finish up yoga teacher training AND managing my son's 25 hours a week of therapy/school, requires my To Do Lists to have To Do Lists right now... And it has been my new mindfulness practice of writing down even one thing to be grateful for, right now, has kept me present to the beauty of now.

There is more I could write about but I will leave it at this, my little mindfulness practices I have been practicing for two and half months are working.... Those small daily changes I have made in my life are helping to clear my head, organize my thoughts, empower my spirit and strengthen my body.

Everyone has 5 minutes to do something they love every day. I have found it to be true. Now that I have it, I hope I don't let it go. It's good for me.... And it only took until my 48th birthday to see that.

And so it was. Little bits of light. Happy birthday to me!

Here's to always learning in our life -  

even when we think, or especially when we think, we should know better.

Blog Name Change

Hello all!

You may have noticed a name change in my blog. I'm glad you have found us even with the name change. I have a number of reasons why I did this but the biggest and truest reason is that life has changed, and I have grown. My love for my sons has grown and how I express that love out loud has changed and expanded. And the new title of the blog now mirrors that.

Crystal baby - is my sweet survivor, Nolan. He's 5 now and in his final year of preschool. He is my crystal child. He is one of many children coming in who need a different world so that they can grow, develop and thrive. He is my driving force of change; in my life, in his life and in the world. Change is never easy and he challenges me to embody the change I wish to see in the world. He is the reason I am "Be the change you wish to see in the world." - Ghandi.  I have danced back and forth on embracing this - Back because of fear that it was too big and too small and because before 2010 I never wanted to do this...  And forth because it was mine to do because of love, what I know to be right and because I am uniquely qualified to do it. (As we all are uniquely qualified to succeed in our own lives) I was resisting the change. I am done resisting. Let's do this.

Star baby - is my sweet little man, Eli. Star baby is my best way to describe him. He was symbolized by Angel baby in the previous blog title which is a common title in the baby loss community. It's used to let others know that this baby is a baby who has died in utero or shortly after birth. I have used angel baby with conflicting feelings. It just never seemed to fit what I felt. Star baby always felt right and true. Images of the sky, stars, galaxies and universes was just a better match to Eli's energy.  The work I do in the TTTS Support Team non-profit is just a small expression of my continuing love for my son.

Me - is me. This one has been hard too. My life is not quiet, nor slow but it can be repetitive and overwhelming. I have always embraced self love and self care AND I watched me slowly go under with the demands of my life over the past couple of years. I remember my flight attendant days where I would advise 100+ people up to 5 times a day to secure their oxygen mask first and then assist their child or the person next to them. I would have people ask why and I would explain that if they don't help themselves they cannot help anyone else.... Yes, I used to teach people this.... And yet... It was never my intention to ignore or disregard myself, I believe I deserve love and care.. It was exhaustion and overwhelm that stopped it and now I have further to go to get back to where I was and more forward.  I am hoping that since I have stopped fighting what is I will have much more energy to live in what is, happily.

So here we are Crystal Baby - Star Baby and Me living in peace with reality and ready for change!

Thank you Byron Katie.

Blogging Again.....

I have decided to step back into blogging our story here. I pretty much stopped in 2013. I did so out of fear. I unexpectedly found myself in the middle of an ugly family court situation with police reports, CPS meetings, lawyers, judges and court rooms.  I was terrified for my family and I did what I do and shut down. I stopped talking to only a few who knew what was going on and I worked very hard to process everything and make the best decisions I could for myself and my son.

Two and half years later, I have decided to stop being fearful. I will be updating some things from the past two years, back dated, and then start moving forward from there.

For those of you who have been reading my blog, thank you for sticking around. And welcome to anyone who is starting in new.

Much love ~

Your Children are Not Your Children

"Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday." - Kahil Gibran

Eli, your short life is not what I would have chosen for you or me or Nolan. Not even close. I would have chosen for you a quiet, joyful childhood, growing up with your brother. You would have experienced the regular childhood and adult experiences of laughter and tears, failure and success, happiness, creativity, friendship and being in love and having your heart broken - And you would have used all of those experiences as a powerful force of love to change the world.......

But I now know that you had your own contract and agreement with Life. I was right that your spirit was meant to be a force love on this earth but in a very different way. Your spirit lives through in Nolan and helps him take on and conquer the challenges in his journey in Life. You are in his smile and laughter and in his tears at night when he has cried out for you. When he says your name and points to your picture. I know he knows you.

Your spirit lives through me. In everything I do, everything I am - mothering your brother, teaching my students, working with my clients, caring for myself, my relationships with everyone. My goals and intentions for my life were set in movement with the birth of you and your brother and clarified with your death 11 days later. I work to be a force of love on this earth because of Nolan and because of you. Every day I unwrap more gifts from you and your short time on this earth. Your spirit is eternal and while my mama's heart still desires to hold your hand, hug you, kiss your face, hear your laugh, see you play with your brother, I know that you are here with me and that love continues on.

"A luminous light remains where a beautiful soul has passed."
You left this earth five years ago today. Your light is just as strong.